About a week ago, my best friend’s husband had a life-threatening emergency and was rushed to the ER. So when I got the call late that night, I too rushed to the hospital to offer my support. It was a harrowing situation.
To give you some background, he lives with several chronic illnesses which they thought they were managing. But come to find out, my BFF’s husband had been hiding his worsening symptoms because he thought he could just suck it up and deal with it. His rationale seemed logical, cuz he’s a typical guy and besides, he HATES, HATES, HATES, hospitals.
So how does this connect with Glut1 DS? Well, let’s just say, that during this crisis, my BFF and I put our heads together (since we’re very experienced at this) and came up with 7 IMPORTANT questions to help us talk to the doctors.
It helped us to keep our heads straight in the midst of chaos and I think it’s transferable to Glut1 DS or any other chronic illness.
And certainly after reading Jami Murphy’s article about a Native American little girl named Abby who also had a harrowing journey, I think these tips would have been helpful for her parents as well!
Why? Because as an infant, little Abby failed to thrive. She was misdiagnosed and prescribed needless and potentially damaging treatments for a disease she did not even have! It took years before her parents could get her a proper diagnosis and treatment.
So if you are a parent of a child who you suspect may have a serious condition such as Glut1 DS, and you are not getting the answers that you need, here’s what you need to say to the doctor(s):
- Doctor, I sincerely appreciate all of your skills and expertise to help my child.
- But I also realize that medicine is not an exact science. It’s an art and there are no guarantees, and I want to understand this better.
- What is causing the condition that my child is suffering from and what is the prognosis?
- Can the condition/disease be treated and if so, how? Please explain.
- Why do YOU feel this way?
- Could other conditions/diseases be causing this and if so what are they? And why did you decide on the [insert name of condition/disease]?
- Are you 100% certain about this diagnosis, because if there is any doubt, I want you to tell me. I am okay that you may not know for certain, but if so, I ab-so-lute-ly WANT you to tell me that you do NOT know. I can handle it.
And THAT my friends should help you to get a diagnosis sooner vs. later and avoid needless hospitalizations and get you the answers that you need.
I hope they serve you well!